Willy offers us a beautiful story of this final journey he took with each of his parents. The metaphor of a flight plan and a plane taking off is really apt because if you think about all that has to go into a plane taking flight—all the thousands of people who have enabled that to happen—those who designed and built the plane, air traffic control, the baggage handlers & ground crew, cabin crew, pilots, the TSA, the people keeping the airport clean, —people seen and unseen— every time I get in an airplane I’m amazed at how much of a miracle I am a part of…
The same can be true when someone dies. It’s truly a miracle that we are born and that we live and then we die but it’s also a miracle how many people are often there to help us along the way, at the beginning and especially at the end. At every juncture in Willy’s story, there were professionals and friends, and family members who he turned to for their expertise, for their information, and for their support. Just like getting a plane to take off, each and every one of these people, seen and unseen, played a role in the final outcome.
In my work on caregiving, I have found it is often the case that people will respond to a story like Willy’s—where he’s writing about everything he’s been through with his parents--with something like, “bless his heart,” or “what a saint he was.” The truth is that most of the time, caregivers have taken on the role because of birthright, because this is what you do as a son or daughter or spouse or parent or a friend. I worked on a study many years ago looking at caregivers who took on multiple caregiving roles and found that they actually had more positive well-being than non-caregivers—the vast majority embraced the caregiving role and considered themselves very good at it. The problem comes in when those caregivers aren’t able to get the needed support to do their job as caregivers. If you’re a parent, you know what I’m talking about. Dealing with that screaming toddler or out-of-control teenager is actually manageable if you have a supportive partner and flexible employer and access to a counselor or healthcare as needed.
One of the strongest predictors of having to place a loved one in a nursing home is a caregiver who is completely burned out and lacking in resources. Caregivers who have access to things like respite care or in-home nursing or hospice or support with their own daily needs are able to hold on to the role they cherish—to hold on to that loved one in their own homes where they want them to be.
in an article by Mills & friends, marking World Hospice & Palliative Care Day, Leave No One Behind—Equity in Access to Palliative Care, they emphasize those from ethnic and racial minority groups and those with lower socioeconomic status are least likely to be able to access hospice and other palliative care. As we all consider the importance of Willy’s advice to us, please also consider how we can best support pathways to access for all. We can certainly do that in the context of our own families, but consider how we can help others with negotiating these tasks- neighbors, friends, friends of friends….and, don’t forget, of course, how our political decisions can impact how money is spent, and for whom. Finally, let’s remember those who are doing the hard work (the certified nursing assistants, personal care attendants, the hospice nurses, the van drivers) and how we support them in getting paid a living wage with paid sick leave so they, too, will have the ability to care for their loved ones.
Willy’s book reminds us that the journey is a long one but is filled with all of those things that make life worth living—the tears, the laughter, the music, the dancing, the hard work, the bourbon (apparently), and the ultimately final rest on a comfortable pillow.